Sunday, September 17, 2017

Good News Again


Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months.  That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago.  M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday.  IgG was 536 mg/dL, about where it has been for more than a year.  This is wonderful.

The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month "until disease progression."  So far so good.  Darzalex is an infusion that takes several hours, but I get a blood draw, then a visit with the hematologist, and finally the infusion, and I'm still out soon after noon.  Some people bring a book to read - I bring my laptop and it's no problem at all.

I take it easy for the rest of the day, and life is back to normal the next day.  Darzalex is given with some prednisone (or dexamethasone) to reduce the likelihood of an infusion reaction, and I do feel some side effects from that steroid, but none from the Darzalex.  Life is good.  28 Infusions of so far - I wonder what my life would have been like without that potent, innovative new medication.

Pomalyst has been part of my treatment regimen, 2 mg daily, for all but one of the last nine years.  For the past two months my doc and I have tried cutting that to 2 mg for 21 of each 28 days, with no discernible increase in M-Spike or IgG.  Perhaps we'll reduce it more, we'll see.

PET Scan:

This was encouraging too.  "Essentially complete metabolic response of lytic bone myelomatous lesions to therapy. No new FDG avid lesions."  In other words, the old myeloma hot spots are gone and there are no new ones.  Three other findings were worthy of note:
  1. Some inflammation at the bottom of the esophagus.  This matches my own symptoms of occasional acid reflux.  Something to deal with.
  2. Stable, chronic thyroiditis.  Yup.  Dealing with it.
  3. "Reactive FDG activity at the origin of the right hamstrings."   No kidding!  I've been battling this running injury all summer, and my sports doctor recently used ultrasound imaging to diagnose it.  He'll be happy to hear that the PET scan confirms his diagnosis.  Cool!  I've requested a disc with the actual PET images (always do), and can't wait to see it myself.

In 14 years with myeloma I have not had a transplant, because for all of that time the medications have kept my myeloma stable.  I asked the doc if there was any reason to think about collecting stem cells for an autologous SCT now, and he thought not.  I'm already 76 and currently on a good regimen, with several new therapies to try when the current one fails, and with more therapies in the FDA-approval pipeline.  By the time those options are exhausted, I'll hopefully be too old for any transplant doctor to consider me a good candidate.  So now my goal is to become the myelomiac to live the longest without a transplant.  Well, somebody's got to do it.


  1. Great news Don. I am on Dara plus Velcade. Things are stabilish. Your protocol may be my next option.

  2. Excellent news Don. It's great that you share this info. I'm Taking Darzalex as a single agent now. I'll have my 25th infusion this coming Friday. My M spike is 0. And my IGG went down as low as 426. Because I was getting many colds I have had two prophylactic immunoglobulin boosts of Privigen or equivalent. Hoping that will help eliminate the colds I've been getting. This has been a wonderful drug for me as well.

  3. How are you doing? I'm just diagnosed and your site gives me hope.

  4. Blood draw last Monday, Feb 5, 2018, everything still stable, now approaching 15 years since diagnosis. More good news. There is a lot of hope!

    1. Hi Don, did you have any side effects after starting the Dex? My dad starts infusions tomorrow, nervous about the intestinal issues and low blood pressure, just wondering about your experiences. Thanks!

    2. Oops..I didn't mean Dex, I meant the Daratumumb. Wondering about side effects after infusions of that. Thank you!

    3. I would have said that I've experienced NO side effects after any of my 35 Darzalex infusions, not even the expected infusion reactions. I'm down to 4mg Dex with the infusion.

      Except just two weeks ago I apparently had a TIA (mini-stroke) the day after the infusion. No way to tell if the infusion triggered the TIA. Now suddenly I'm taking a statin, more aspirin, and wearing a heart monitor for a month.

    4. I'm so sorry to hear that about the TIA. I hope you have fully recovered. You are a tough man and I admire your strength. Thank you for your reply.

    5. I expect your dad is tough too :-)

    6. Hi Don, are you all right in the meantime?

      Greetings from Germany!


    7. Indeed I am all right. Still on the same regimen, no significant side effects, and the cancer still seems to be managed. Life is good!

  5. Great news Don! I hope to emulate you on the 15 years. I'm at 6 years.
    What was your FISH carotype, btw, if I may be so nosy !! (Not exactly cocktail party talk, LOL!)


  6. why you never discuss your side affects on the drugs you have taken

  7. Hi Don,
    i have been searching since diagnosed 6 months ago for runners. finally, i came across your blog. very impressive and inspiring. good to hear someones voice with such athletic conviction. i have been a competitive runner for decades and hope to continue even with this diagnosis. i am slowly building back up after being off for 5 months with a damaged T10 due to the weakened bone. A former usa olympic trials qualifier in the marathon, i am inspired by your story and will keep at it until i am able to toe the marathon start line again.
    thank you,

  8. Don, any chance you could write an update. I have been following you for quite a few years; always interested in your progress. Thanks. Cynthia